Again, where do I begin? Many things have happened this year. You celebrated another birthday, another autism anniversary of diagnosis day has come and gone, you performed in your very first fourth grade show, and you finished elementary school! You are now the big 1-0 (10)!

You have made so much progress! I hear the words all the time, “He is doing great! He has come so far!” When I hear those words I have to take a step back and think about where we started and where we are now. I think back to the first year that you, Autism, came into our life. You didn’t have any words, wouldn’t look at us, wouldn’t respond respond to your name when we called you, would look at lights and run around in circles, would flap your hands, you stayed in your own world, a world that shut us out and only included you, Autism.

-The ones that said I’d never make it, The ones that said there’s your chance, go take it. Took all of you for me to get this far!-

This year you started middle school. I will admit that I spent most of the summer stressing about your transition to middle school. I tossed and turned most nights hoping and praying that you would be ok. Many nights right before bed, you would look at me, and say, “I’m afraid of middle school.” My response was always the same, “You will be ok! I will make sure of that!”

Autism, your transition to middle school has been good. You love the school, your staff, and the teachers! You are happy. Happiness in our world is what matters.

-All the people that I haven’t seen in too many years, all the faces in the bleachers, never gave up on my teachers, yeah this one’s for the ones who got me here.

Autism, we work hard every day, every day to continue to pull you out of your world and into ours. We continue to be blessed with great people in our lives……to all the teachers, paraprofessionals, administrators, bus drivers, bus monitors, early intervention staff…..you are the ones who got us here. THANK YOU!!!

We have come so far, have a long way to go…..we will get there….happiness and progress are by our side

All my love,

Mom

-And I thank God that I met you, hope you know I won’t forget you, This one’s for the ones who got me here. – Cole Swindell

I often think about not writing to you anymore. Life is so busy lately that it’s hard to find the time. Then something happens. I get a text, a call, an email, a message through a colleague that a parent has read my entries and it gives her hope as an autism mom. I’ve gotten many signs lately that I need to keep writing, I need to keep sharing our story. Our story is just one autism story. One story that gives hope, one story that may spread awareness, one story that may help a parent with a newly diagnosed child. I remember our early diagnosis days, our days that you didn’t have words, you didn’t look at us, didn’t know your name, you were locked in your own world.

Autism, we fought hard. We fought hard as parents, we fought hard as a family. Life keeps marching on, you keep getting older, we see progress, we worry about future struggles. Worry is something that will never leave us, worry is sometimes my best friend, and my enemy. Worry helps me to prepare for the next obstacle, worry helps me to put the future in perspective. I wonder if there will ever be a day that I won’t worry about you. I guess as parents we never stop worrying about our children, especially our children with autism.

Autism, I often find myself thinking about the days when we would take you to sporting events, including your older brother’s games. It was so difficult. You would have meltdowns. You would be overstimulated. You would cry, scream, cover your ears, flap your hands. I would want to leave. I would tell myself that it wasn’t worth it. I would make excuses to keep you home. You would lock yourself in the bathroom knowing we were going to a game. We would have to find the key to unlock the door, you would be sitting in the bathroom, crying, screaming. Dad and I would question if we were doing the right thing. Autism, I don’t know if dad remembers those days, I remember them like they were yesterday. I questioned myself, questioned dad, if we were doing the right thing by pushing you through, making you go, all while putting a smile on my face. Some of those memories are painful, and some are victorious.

I guess all the difficult times paid off, all the “just push through it”, all the visuals, all the preparation, all the doubts, all the small victories, meltdowns, and hand flaps paid off. Autism, you love watching sports, you love attending your brother’s games, you love going to sporting events, especially UMASS Lowell!

Autism, you have found a new love, that love is hockey. You love watching it, and you ask every single day how people skate and if you can skate. During the winter months you would ask me to search for hockey tickets. You would find your perfect seats to that week’s UMASS Lowell game. You would ask me every single day, ten times a day…every single day, for me to get you tickets. You would make a sign to bring with you to each game. You would cheer if they won, and would come home crying if they lost.

Today was a good day, a day that I will remember. Autism, today I got an email from a woman that I’ve worked with. Who knows your story, our story, has followed your progress, has seen you at UMASS Lowell hockey games. I didn’t know this but she saw one of the signs you made, she talked to you about the game, she saw your excitement, and how far you have come, your progress. Autism, today she surprised you with a signed goalie stick, signed by your favorite team, the UMASS Lowell River Hawks. I cried when I heard about it. She surprised you with that signed stick today. You haven’t put it down. You have read each player’s signature. It was an amazing day…a day that we will remember…a day that makes us reflect on autism progress. I will always remember today’s smile and know that those ‘just push through it’ helped us along this autism journey.

Autism, some days are diamonds, some days are rust, some doors are open, some roads are blocked. You’ve got a heart so big that it could crush this town, even walls fall down.

All around your island there is a barricade. It keeps out the danger, holds in the pain. Some times you’re happy, some times you cry, half of me is ocean, half of me is sky, you’ve got a heart so big it could crush this town, even walls fall down…..Even walls fall down.

Autism, we will continue to ‘push through’ to make those autism walls fall down.

Time keeps ticking and every day you get a little older and a little taller. Sometimes I catch myself stopping and staring at you, watching what you are doing, trying to figure out what you are thinking. How can you possibly be in 4th grade? Some days it feels like you just entered our world, other days it feels like you have been with us forever.

Autism, this past summer you went for your yearly physical. I remember you were asked the question, “What do you want to be when you grow up?” A simple question, that usually has a simple answer….teacher, fireman, policeman. I remember watching you process that question. You sat for what seemed like hours. You stared at the wall. Then your response was, “That is a long time.” I laughed. You were right, Autism, that is a long time. I had to take a step back and see things through your eyes, your mind.

On the drive home I became really sad. Everyone has dreams. However, what did that look like for you? A few weeks later you said to me, “I know what I want to be. I want to be a mascot.” My response, “That’s great!” Autism, I wanted to shout from the rooftop……..”MY KID HAS A DREAM!” I didn’t care that you didn’t want to be a doctor, a policeman, a teacher. You had a dream of what you wanted to be and that is all that mattered. A dream of being a mascot.

So baby, dry your eyes, save all the tears you cried. Oh that’s what dreams are made of.

Autism, I had a dream…a dream that you would talk someday, a dream that you would say my name, a dream that you would look at me when I called your name…….those dreams have come true.

Reach for the sky, baby just spread your wings. We’ll get higher and higher straight up we’ll climb.

Autism, my dreams for you have changed over the years. Today, my dream for you is simple…to be accepted, understood, and most importantly…..to be happy.

‘Cause we belong in a world that must be strong, Oh that’s what dreams are made of

When I first heard the words, “Your son is autistic”, my dreams for your future were lost. Autism, I often wish I could go back in time and write a letter to the future me. My dreams are clearer now. You continue to remind us that life is about dreaming…..and dreams can come true.

And in the end on dreams we will depend, cause that’s what love is made of

I’ve spent so many times writing to you, only to delete it, forget it, and then re-write my words. I used to write to you more frequently when you were younger. Lately I seem lost for words. lost for direction. You’ve have done amazing things lately. You have learned to tie your shoes. Something we thought was never possible.

We had a great summer. You asked for three things….the mountains, the Spinners, and the beach. Places and things we never thought we were able to go to, sit through, enjoy. You asked to be covered in sand. Simple things that I take for granted.

Autism, you have grown so much. You have gotten taller, celebrated another birthday, another Autism anniversary. You have slept in a tent and watched the sun rise.

We have worked hard….your team and I. We have pushed you to learn new things, to experience new things, and we have embraced you for who your are and where you are headed.

Autism, you have started to play sports. You have joined Kids in Disabilities Sports. Floor hockey is your favorite. You love watching your brothers play sports. You are their biggest fan. You love attending their games and cheering them on. Your oldest brother’s friends adore you and accept you. I see your face light up when you they call your name, “G-Man”, after each game. “Bring on tomorrow, I’ve got today.”

Autism, I try to focus on where we are today when I think of where we used to be. It has taken a village to get you where you are today. I thank each member of that village. The village that taught you how to sit, listen, learn, talk, tie your shoes, play sports, ride a bus, eat new foods, write your name, add, subtract, read, say hello, follow directions, play with peers, and make friends. My days are brighter because of our village.

Bring on tomorrow, I’ve got today. The memory of a day like today will get you through the rest of your life.

It’s been a while since I wrote to you, a while since I’ve shared my feelings and thoughts. I sometimes wonder if I should stop writing to you. Then I often think that my hope is that some day you will read these entries and realize how much you have touched my life, how even after a bad day there is always hope for a brighter tomorrow.

Autism, every year you are changing and growing. With growth comes progress. Some years there is more progress than others, but overall, there is progress. I find myself thinking back to all the things that you couldn’t do…..all the things that I never thought were possible….I smile when I think of those things, things that seemed impossible back then.

You had you very first successful visit to the dentist a few weeks ago. It’s taken us YEARS to get to this point. Years of meltdowns, years of social stories, years of just sitting in the chair at the dentist and then leaving just to acclimate you to the environment, years of practicing at home, years of special toothbrushes. The work has paid off. I had happy tears watching you sit in the chair and allowing them to clean your teeth.

Autism, you received an invitation to a rollerskating playdate from a peer in your third grade inclusion classroom. You said you wanted to go. You have never been on roller-skates, and I was nervous about how you would do. I decided to take you. I walked you around the inside of the skating circle and held you up. You were so happy. A few peers came over to say hello and then skated away. You were happy, I was happy. You were included. Autism, inclusion means so much in our world. Before we left, I walked you over to the peer who had invited you to. I prompted you by saying, “Gavin say thank you for the invite.” You were able to thank her, and she replied, “Thanks for coming.” Inclusion opens up your world!

Autism, I’ve been thinking a lot lately that most children your age have a few good friends, most typical children your age have a best friend. Your brothers have good friends, even best friends. We all need a little help from our friends in life. When I thought about who your best friends are, I thought about Dad. “Let me be your sanctuary. Let me be a safe place for you to fall.”

I remember one of the first things that dad had asked the teacher when your oldest brother started kindergarten, “Does he have friends?” He didn’t care about his grades, his strengths, his weaknesses. He cared about friends. I often think about friends in the Autism world, I often find myself asking will you have friends? Will peers think you are weird? Will they think you are different? Will you be looked at as the misfit, the kid that doesn’t fit in? “We have weathered though the storms, taken comfort in each others’ arms. Let me be your sanctuary.”

Autism, you asked to be in the school’s science fair. Dad and I knew that it would be an undertaking to help you, but inclusion is always the goal. You chose volcanoes. We worked together, the three of us. We held your hand and walked your through it step by step. You were so happy, and dad was so patient. I helped you bring the finished project to school. You struggled to explain your project. You had the idea, but I had your words. “Let me be your sanctuary. I will share the weight you carry.”

You received third place for demonstration/research. I had tears of joy. Inclusion means the world.

Autism, Dad and I will always be your sanctuary. We will fight for awareness, acceptance, and inclusion. We will work to make you happy. “I can take away your worries, the refuge from it all. Let me be your sanctuary.”

May you always know that Dad and I are your best friends. You will always fit in. You are our missing puzzle piece.

“Tell me all about the day you had, let me be your sanctuary, let me be a safe for you to fall. When the dark clouds come again, I will lift you up and take you in. Let me be our sanctuary.

It’s been way too long. Too long since I’ve written to you, too long since we’ve chatted about our life, our time together, our past, and our future. You started third grade this year. It makes me sad that you are getting older, but happy that you continue to progress and discover new things in life. You continue to be a student in a specialized classroom to meet your special needs. You’ve learned to color in the lines. In our autism world, coloring inside the lines is a big deal. Third grade has been a bit of adjustment for you. You learned quickly that there is more reading and math to be done, and less play time. Your motivation to complete school work was a bit of a struggle. We continue to be blessed with great teachers, paraprofessionals, and specialists that support you, teach you, help you grow, challenge you, and help us work through your rough patches. Your teacher, Mr. Justin and I worked together to come up with a plan that would reinforce your work compliance. Work compliance is a big deal in our autism world.

Autism, a couple of weeks ago dad and I decided to take out old home videos. We found videos from 20 years ago when daddy and I were just dating, our wedding, the births of you and your brothers, lots of firsts. First birthdays, first steps, first words. The look on your face when you got to see your beloved Papa on the television was priceless. You began pacing and flapping, and just stared and smiled at the screen. Autism, I miss him too!

We spent hours watching the videos. Then it hit me. There you were on the screen, June, 2010. A week before your diagnosis. Why didn’t I notice it then? Was I still in denial? You were just this little guy. You stood on your tippy toes, flapped your hands, and ran around in circles. You had no language, you made no eye contact, you were in your own world. It was painful to watch. Why didn’t I see you back then? Then the videos stopped. The diagnosis came, Autism, and our video taping stopped. I have no videos from that point on. It made me so sad. Sad to think that six years have gone by and not one video. I wish I could have spoken to myself back then, tell myself to snap out of it and live life. Don’t be afraid. You will enjoy this journey. When I get where I’m going there will be only happy tears. I will leave my heart wide open. I will love and have no fear. When I get where I’m going………

Autism, I’ve cried, I’ve struggled on our journey. I’ve laughed and celebrated our success. There are so many things that you can do now that I never thought was possible. You may still need specialized programming to meet your special needs, but we are going places. You make me laugh and smile. It’s taken us a long time to get where we are. I wish there was someone to tell me 6 years ago to leave my heart wide open, to love and have no fear. Wait until you see where you are going. I wish there was someone to tell me to video tape life. You won’t want to forget where you were. You will want to remember. When I get where I am going. So much pain and so much darkness. This world we stumble through. All these questions I can’t answer, so much work to do.

The video camera is back on record. Our life has been on pause for too long. Autism, there will always be questions, doubts, fears, and happy tears.

When I get where I’m going there will be only happy tears. I will love and have no fear.

It’s been quite some time since I wrote to you, and a lot has happened. Your beloved Papa has moved on from this world. However, Autism, you already know this. You ask me each and everyday where he is. My answer is always the same, “He’s in heaven.” The next question that follows is always, “When is he coming home?” My answer to this question is always the same, “He isn’t.” The next question that follows is usually, “Do you miss Papa?” My answer, “I miss him everyday.” The same questions, the same answers each and every day. Some days you ask these three questions only once, most days the questions are asked three, four times. FullSizeRender copy

Autism, he should be here. He should be here to see you grow. He should be here to see your achievements. You started taking swimming lessons. To say it was easy to get you to your first lesson would be an understatement. You refused to go. You locked yourself in the bathroom. You cried, you yelled, you sobbed hysterically. I wanted to throw the towel in. I wanted to give in and tell you that we were not going. I knew that would be the worse thing for you. I had to help you get into the car. You yelled and sobbed the entire car ride. You refused to get out of the car. I had to help you out. I was exhausted. I was determined to not give in and not give up. You cried the entire walk in.

I struggled with my own doubts and questions. Should I tell your instructor about you? Would you fit in? Would the kids think you were odd? Would the instructor wonder what was wrong with you? Would you be able to follow instructions? Autism, he should be here. He always gave me advice. He was your biggest cheerleader. We walked into the pool area to find that we knew your instructor, Olivia, and she knew about you. I told you that you would be fine and that you would be great. I sat from a distance watching you fit in, watching you follow instructions, watching you swim, watching how comfortable Olivia made you feel, how comfortable I felt. The tears rolled down my cheeks the entire lesson. I think that your Papa made sure that you got the perfect swim instructor. He should be here to see you swim.

Autism, last week your school had a science fair. You were so excited when information came home from school. I honestly didn’t think it was something that was possible. Well, you proved me wrong. We completed a project together, and you attended the science fair. I did need to
remind you during the evening to hold your hands and stand still to get you to stop jumping and flapping. You were so excited to see that you received a participant ribbon. You told everyone that night at the science fair, “I got a participant ribbon! I got a participant ribbon!” I didn’t care if they thought you were odd because you kept saying this. You were happy, successful, and part of a school community. He should be here to see you shine at your science fair.

You’ve learned and changed a lot in the past few months, Autism. Something that seems so little is a big deal in your world. You’ve learned how to make a sandwich all by yourself. You can get ready for bed without any verbal prompts. You’ve discovered the comics. The Sunday comics is something your papa loved. You’re learning about loss. He should be here…….

“It’s one of those moments that’s gotten your name written all over it. You know that if I just had one wish it’d be that you didn’t have to miss this. You should be here. You should be here, standing with your arm around me here. You should be here…”

Hello, my name is Paula. I am a Special Education Teacher by day and a blogger by night. I’ve been married to a wonderful man, Phil, for the past 15 years. I have three sons as well as a stepdaughter. My youngest son, Gavin, is autistic. He was diagnosed a week before his second birthday. I love to read, am a 5K junkie and constantly crave junk food. My favorite meal consists of fried pickles and beer.

My life goal took a turn when my son was diagnosed with autism. It’s no longer about living the ‘American Dream’. Instead it’s about spreading autism awareness. I blog to vent, educate, celebrate my son’s and families’ victories, as well as describe our day to day struggles and challenges. It’s been a roller coaster of a ride since I heard from a doctor at Children’s Hospital in Boston, “Gavin has autism.” Step on board to read, Autism Diaries: For Every Locked Mind There Is A Key To Find. Fasten your seat belt because the ride can get bumpy, however, it’s also sure to make you smile and laugh.

Today is June 18th. A date that changed my life forever. A date that I will always remember. Three years ago today, Phil and I sat in front of a team of doctors. We heard three words that forever changed us, “Gavin has autism.” The words came eleven days before my baby turned 2. Three years ago today you turned my world upside down.

You brought countless hours of intensive early intervention. You locked my son’s mind from making eye contact, communicating, playing with toys, following directions, and talking. You exhausted him and me. Three years ago today you turned my world upside down.

You brought questions with no answers, you brought flapping, jumping, bouncing, and visual stimming. You brought tears and heartache. You brought words, “Why? How? What?” Three years ago today you turned my world upside down.

You brought an IEP, specialized teachers, staff, and therapists. You brought social stories. You brought a specialized program to meet my son’s autistic needs. Three years ago today you turned my world upside down.

Autism, today was a special day. It was our AD (autism diagnosis) anniversary and it was our boy’s graduation day from Pre-K. Today, I embraced you and held your hand. I held my tears and held my head high. Today, I thank you. I thank you for helping me learn through my boy’s eyes. I thank you for making me strive to be a better mom, a better teacher, a better person. Three years ago today you turned my world upside down.

Autism, today you turned my world right side up. You have brought countless special people into our lives. You have brought the G-Man Foundation. You have brought a Pre-K celebration.

Autism, today I made a vow. However, you probably already knew that. Today I thought of the future. Three years ago today you turned my world upside down. Today you turned my world right side up. I vow to make this world more understanding of you. I vow to make this world more aware of you. I vow to make this world more accepting of you. I vow to make this world embrace you.